Cetuximab.....the rash that keeps on going!!

Hi Knowledgeispower20

I'm very sorry to hear that your mum has a very painful rash after taking cetuximab. It does sound like she's experiencing some really horrible side effects and I can understand why you'd want to try and find a solution.

Can I suggest that you also post this question in the secondary liver cancer and bowel cancer groups, which I can see you've joined, as you may find people in those groups who have had the same problems as your mum.

If your mum's rash is still a problem then I'd recommend that you speak to her CNS and tell her that you don't think the prescribed hydrocortisone is working. They will want to get on top of this and wouldn't want your mum to be suffering.

x

Hi I know it’s so hard for your mum , And you , we have similar stories so thought I’d share, my mum had the same , bowel cancer primary led to  liver cancer , she had a part op first 2017 on bowel then liver operation (66% removed) Followed by chemo , she had 18 months cancer free !! We holiday like no other . It came back Xmas 2019 , started cetuximab feb and having chemo weekly , started getting the spots on head /neck which did go after a few weeks , only used cream it seemed the hair loss caused it to worsen like the follicle got infected. I hope this helps ,keep strong , my mums 69 and I know it’s a worry .

Hi Danielle,

Sorry for late reply....I don't seem to be getting notifications. Your poor mum must feel absolutely devastated that the cancer has returned....how is she coping? And you must be feeling awful too......this is a completely vile disease. My mums one biggest fear is living in the shadow of cancer......I can't even think about it right now. Mum has had very little emotional support for the cancer or the spots, and currently is considering the option of packing it all in. The spots have got better, but she seems to be getting whole body spots and itching. If it's not that it's something else....sore mouth, weird taste buds, nausea, extreme feelings of depression/suicidal thoughts. And now we have a killer virus to cope with too. I have added you as a friend....pm me whenever you need a chat.

Hi 

thanks for your reply , tell your mum to stay strong and keep up with the treatment, the fact we had 18 months free after first lot of operation/chemo meant we shared lots of time together and holidays and made the most of every day . I know the treatment sometimes is worse than the cancer but if they say it will help reduce the rumours it’s worst it . We awaiting her CT results to see if the last 3 months of chemo has done some good x 

How is your mum?.....my mum is feeling like giving up due to the side effects and time all this is taking. It's so slow!! She is only on 40% chemo and reduced cetuximab. I hope your mums CT scan showed positive results.

Keep in touch.

Hi mums found the side effects very hard too , it’s awful how although you know it’s helping fight the tumours it’s also making them very sick , mums on 75% at the moment . Her side effects are mainly fatigue, dizzy and diarrhoea. Her scan showed a couple of the smaller rumours had shrunk and the bigger one next to portal vein and Bile duct only grown a small amount which may have been from dates between first scan and treatment starting ( 2 months ) make sure your mum is telling her oncology nurses exactly how poorly she’s feeling , my mum will call them. Also ask her to ask them what her blood count is each time they give her results , as sometimes they just say it’s ok ! 
message anytime x